Family life with MS

MS can affect many aspects of daily family life, particularly if a person hassymptoms such as fatigue , eyesight problems and cognitive changes. Couples may find that they have to review theirroles within the household and this can be difficult. For example, a family with two incomes may have to learnto cope on one, or one of the partners may have to take on additionalresponsibilities for running the home or caring for children.

The impact of MS symptoms on family life

It is estimated that as many as half of people with MS experience mild cognitive problems. Because cognitive difficulties in MS are “invisible”symptoms, family members may misinterpret behaviours or reactions onthe part of the person with MS. Difficulties with memory, problemsolving and concentration may be interpreted as the family member notcaring or not listening, being uninterested or unwilling to cooperate.Correct information can be the key to helpingfamilies understand and cope with cognitive problems.

Fatigue is another misunderstood, often misinterpreted, invisiblesymptom of MS. Often a family member with MS appears to lack motivationwhen, in fact, the person is experiencing MS fatigue, atype of tiredness or exhaustion that is an actual symptom of the disease. When the family has aclear understanding of fatigue and its impact on the person’s ability tofunction, they may be more keen to help out with household tasks,reconsider family activities that may be strenuous for the member withMS, and, in general, re-organise the house and habits of the family in away that helps the person with MS conserve energy. It is important forthe family to understand the importance of energy conservationstrategies that can help the person with MS have more energy to spendwith the family.

Read more in MS in focus – special edition on the family

How families cope

Each member of a family has his or her own coping style. On finding outthat a family member has MS, some individuals look for as muchinformation about the disease as they can find and perhaps prefer totalk to others about their experience with MS. Others in the same familymay deal with news of the diagnosis by keeping busy with otheractivities in order to avoid thinking about MS. Each person brings intothe “MS experience” his or her own way of coping. Different copingstyles within the same family can be complementary or contradictory.Contradictory coping styles may lead to conflict within the family.

Family members should be encouraged to cope with MS in their ownindividual styles, while respecting the coping styles of other members.However, communication is key, and if a family traditionally has dealtwith problems by ignoring their existence, assigning blame or using someother, ineffective coping style, the family’s way of confronting MSwill be the same, at least without the help of a family counsellor orpsychologist.

It is recognised that MS can add stress to a relationship. Theunpredictability and progressive nature of the disease, the changes andsacrifices that might be required and the impact of some symptoms are all obstaclesthat make it difficult for both the person with MS and their partner tocope. It may be useful for a couple to seek help from a counsellor.

MS affects every member of the family. Learning about the disease andits possible effect on the family can help in being prepared to facechallenges as they arise. Families that are informed about the differentresources available can choose those that best suit their needs andlifestyle.